I just don't get it. I did everything right. All I wanted to do was go to church and sing in the choir. So yesterday I spent the whole day focused on doing everything possible to make sure Sam got a good night's sleep. I changed the clocks forward first thing in the morning hoping to "psych" us all into the time change. I fed him regularly. I made sure to pay attention to him so he didn't feel ignored. I did his 45 minute treatments three times and I made sure his medications were correctly balanced. I even changed the furnace filter because it was looking a little gray on the theory that clean air helps him breathe better. (It's just a theory. The allergist says he's not allergic to anything. His breathing problems are because of the way his head is shaped and because of the way his brain works.)
I bragged to a friend that I had finally reached acceptance of the fact that my number one priority is managing Sam's lungs. If I do the treatments correctly and get him to the chiropractor twice a month, he is fine. Even the apnea is reduced. If I let the schedule get out of sync, he is miserable. And so am I. It's a very plain fact. My life is ruled by this routine.
How nice. How safe and predictable. I am secure and in control of my life. Keep it simple and keep it sane. That's my motto. Stress and failure occur when I rebel, peace and success are the result of faithfulness.
In spite of doing everything right, Sam and I were up until 3 am. He was groaning in sinus pain and trying to be brave. I was tender and sympathetic and trying not to hit him over the head or give him whiskey. I WANT TO SING IN THE CHOIR!!! Can't he get that?
How deeply spiritual I am not in the middle of the night. On Friday I did the Stations of the Cross and Taize and then Luis gave a very lovely bi-lingual talk. I sang. I read really good scripture verses. I got to see so many of the people I love. Rosie and I actually talked about how important it is for choir members to worship as they sing. It makes a big difference if we worship instead of perform. I don't do either. I just love to sing with other people. Well, maybe that's worship on a very primitive level. I only get to do this twice a month on a good month. I miss those two Sundays often because of Sam.
Two weeks ago I gave a talk at another church. One of the major themes of my talk was we are not in control. Why do bad things happen to good people? Because bad things happen to all of us. God does not cause them to happen. They are not part of God's divine plan. The Bible is full of stories about bad things happening for no reason or because of an enemy. Whether the enemy is a person or an event or Satan, bad things happen and people in the Bible turn to God and ask for help. Joseph says to his brothers, "You meant it for evil, but God meant it for good." Paul says to the Romans, "All things work together for good." In other words, God answers prayer and comes to us in our distress and redeems the situation. Sometimes. God redeems us always. Eventually.
Last week I got to go to SPRED church. We all three made it and Charley played with that choir. It is a wonderful sound. I do worship when I go to SPRED church and especially when I hear Charley playing lovely music. The message from Fr. Jim was something like "Jesus says to you today where you are standing right now is holy ground. Let the fire of my divine presence grow within you. Nurture it." I'm home this morning. Where I stand is holy ground. I have a Bible and some really good tea and Sam's asleep. I can go upstairs and turn on some music and nurture the divine in me. That is always a possibility.
I spend soooo much time alone I'm becoming a Desert Mother and not by choice.
I have often said that I don't have any choice or control over the bad things that come to me. BUT I do have a choice about how I will respond to them. That's the part where God comes in. God is apparently not going to intervene and make Sam healthy. But God can help me appreciate my time with him and love my life and manage the difficulties, if I ask. Although I wouldn't say no to a healing...
But in spite of all my wisdom and 28 years of learning the same lesson over and over and over again, this morning I'm just grumpy. I didn't get enough sleep last night, I was scared and unsure what to do for most of it and this morning I don't get to sing with the choir. Life's not fair.
Do you know that the divorce rate among families who have a child with disabilities is somewhere around 98%? The fact that I make it to church at all is due to the fact that we remain a two parent household after all these years. There's a miracle. Charley is playing his saxophone this morning in our old church. I hope he gets a lot of love and gratitude. I hope he comes home feeling good and refreshed and ready for another week at work.
I hope I get to go to church next week. AND SING!